2 PART WEBINAR: It’s Time to Deliver: Including Pregnant and Lactating Women in Clinical Research

Throughout the 80s and much of the 90s, I practiced medicine in Cameroon, West Africa. Time and again, I treated women in labor or just after delivery. Time and again, they were brought to me too late. Some died. Some lost their babies. Some were left leaking urine and/or feces uncontrollably, suffering from a birth injury known as obstetric fistula.

This struck me as entirely unjust and unnecessary and it strengthened my resolve to contribute to altering this reality.

An obstetric fistula occurs when a woman experiences prolonged and obstructed labor. The condition is preventable, but only if the woman receives skilled care in time. Once she develops fistula, it can be repaired with surgery, but the obstacle for the woman remains the same as those that led to the fistula in the first place – finding access to a trained surgeon at a hospital equipped with the right instruments and supplies. For many, the nearest option may be hundreds of miles away, and transportation options may be expensive or infrequent.

Because of this, at least 2 million women, mostly in Africa, suffer from obstetric fistula. The mere existence of this condition is a signal that existing health systems are failing to meet women’s reproductive health needs.

Yet, we cannot ignore some of the important advances we have made in the last decade to prevent and treat obstetric fistula, arguably the most devastating of childbirth injuries. While not nearly enough, the progress to date demonstrates the potential for dramatically improving health care for women – not 100 years from now, but within the next decade.

Following the lead of stalwart fistula champions, there has been growing support over the past decade from various government agencies and organizations like USAID and UNFPA to end obstetric fistula. They recognize that women who have been so repeatedly failed deserve better. Together with funding, there has been a notable increase in programming and coordination around fistula through new professional associations, international coordination networks, national working groups, and task forces. Such collaboration has increased public consciousness and media coverage, giving voice to the needs of women with fistula.

But responding to these needs involves more than closing a hole. It requires resources and surgeons with specialized skills, both of which are scarce in many of the places where fistula occurs. Some women may require more than one surgery, as many fistulas are complex, involving multiple tissues and organs. Women with fistula have often been traumatized and stigmatized and require both physical treatment and psychosocial counseling and support before the surgery, through treatment, and to the point at which they are ready to reintegrate into their communities and families.

If this sounds daunting, that’s because it is. But progress is achievable. Whether we’re individuals, hospitals, or organizations, each of us has a role to play. Our efforts are part of a broader push to successfully and sustainably improve maternal health in a comprehensive way. To do this, we must build a strengthened health system that allows us to coordinate and communicate to make sure that our efforts are complementary, not duplicative. This also means working to prevent fistula in the first place by meeting women’s need for contraception, skilled birth attendance, and emergency obstetric care.

This is possible if existing health systems are properly supported through partnerships with national governments and institutions. We know that this is the most sustainable approach. Not only is it the right thing to do, but it also captures both the spirit and intent of the Obama Administration’s Global Health Initiative.

An estimated 100,000 women will develop obstetric fistula this year. We need to fuel the momentum to reverse this trend. Implementing a lasting solution requires thoughtful, knowledge-based collaboration that ultimately strengthens health systems – and transforms the lives of millions of women.

This is a guest blog by Ruth Landy, a strategic communication consultant based in San Francisco following global assignments with UNICEF, WHO and two global health partnerships.

SAN FRANCISCO, California — Maternal health was on the agenda here last week.

It’s more dangerous to give birth in the U.S. than in Kuwait or Bosnia. In California, the number of women dying of pregnancy-related causes nearly tripled between 1996 and 2006, according to unpublished state data. Worldwide, a woman still dies every ninety seconds during pregnancy or childbirth.

“Statistics are people with the tears wiped off,” said Dr Suellen Miller, director of the University of California San Francisco’s Safe Motherhood Programs, introducing one of two maternal health events taking place in the city last week. The university’s Global Health Sciences program hosted the California premiere of No Woman, No Cry, a compelling new documentary by supermodel and advocate Christy Turlington Burns, at its new Mission Bay campus.

Across town, Amnesty International held a packed session on maternal health during its annual general meeting at the Fairmont Hotel. The well-known grassroots movement has made this a priority issue, campaigning for the right to maternal health in Burkina Faso, Sierra Leone, Peru, Nicaragua and … the United States.

Last year Amnesty issued a scathing report calling attention to the maternal health crisis in this country. The U.S. spends more money on health care than any other nation. Yet in a UN country ranking we are 50th when it comes to a woman’s risk of dying in pregnancy or childbirth. Women of color and uninsured women are particularly vulnerable.

“Being uninsured and being pregnant is quite a disaster right now,” said Jenny Joseph, an inspirational midwife portrayed in Turlington Burns’ film, whose clinic serves low income women in central Florida. Political leaders are beginning to take notice. U.S. Representative John Conyers has just introduced the Maternal Health Accountability Act into Congress to address these disparities and push for better research and reporting.

The personal as political coursed through both events. At the UCSF screening, Christy Turlington Burns described how her life-threatening hemorrhage while giving birth in a New York hospital changed her life. Learning her complication is the leading cause of death for women giving birth in the developing world, she went on to produce No Woman, No Cry, giving a voice to women in Tanzania, Bangladesh, Guatemala and the U.S. “I realized I could do something about this,” Turlington Burns said.

Suellen Miller, who had a successful practice as a midwife in “affluent Marin County,” got religion about safe motherhood when she visited Nepal with her 10-year-old daughter. There she experienced the lonely, unsanitary circumstances under which poor women were delivering their babies and decided to shift her focus. Today she is championing the LifeWrap, a simple neoprene and Velcro first aid device which can save women’s lives when they are hemorrhaging even as they face agonizing delays in receiving care. Miller is conducting scientific research to test the LifeWrap’s efficacy on a large scale. Initial results from Nigeria and Egypt are promising.

Both of San Francisco’s maternal health events ably combined local, national and global perspectives into one mix. It’s the kernel of multi-tiered approach to connect organizations working on maternal health around the world, at all levels.

How can we further cultivate linkages between local and global advocates in rich as well as developing nations? Can global donors help nurture these indispensable networks?

We haven’t connected all the maternal health dots yet. But we’re on our way.

GHC Policy Communications Coordinator Vince Blaser is traveling in Zambia and Tanzania to visit member programs and report on policy connections. This is the fifth of his reports.

KARATU, Tanzania – A family recently called 41-year-old taxi driver Max J. Sikoyo at about midnight. An HIV-positive woman was suffering from an opportunistic infection and needed to be transported to the hospital. She died in route. Before taking off to pick up a client on market day here in Karatu, Sikoyo told me this story as both a reason for applying the training he received from the Minnesota International Health Volunteers (MIHV) Tanzania Child Survival Project, funded by the USAID, as well as the challenges that come along with the aims of the small program.

Sikoyo and Daniel Domician Sanka, 35, another taxi driver, both said that the program has been beneficial to themselves and the community but added that they would like to see fuel costs subsidized by MIHV because some of the rides they give do not get reimbursed. Innocent Augustino, 28, the monitoring and evaluation coordinator of the program, said he understands the drivers’ concerns but added the request for subsidizing fuel costs is not sustainable – a message consistently driven home by MIHV-Tanzania Country Director Jolene Mullins.

Although MIHV-Tanzania is focused on child survival, it truly embraces the buzz around integration of services around President Obama’s Global Health Initiative by delivering training and behavior change communications on maternal and newborn care, family planning, malaria, control of diarrheal disease and prevention of acute respiratory infections such as pneumonia.

One of the major components is Men Active in Sustaining Health Action (MAISHA) driver program, which trains taxi drivers in the region to convey health messages, assist in emergency transport in clients and distribute condoms. Another major component is the training of traditional birth attendants (TBAs) and community owned resource persons (CORPS) – with the TBAs leading “Survive and Thrive” groups to model healthy behaviors and support young mothers and their children.

Over in nearby Changarawe village, the benefits of the program are clear to Susan Stephen Welwel, 49, secretary of the traditional birth attendants in the village and a member of the village counsel. The number of women dying because of pregnancy has gone down since MIHV has trained TBAs and CORPs – Welwel is sure of it. However, she and other TBAs are still waiting on supplies from the district health office that Welwel believes would make even more of a difference.

The program just completed its mid-term review with some very substantial improvements from the beginning of the project on many of their indicators – such as the percentage of women who received postpartum care within 72 hours of birth (20 percent to 92 percent) and the percentage of children under two experiencing danger signs in the past two weeks who were brought to a health facility (38 percent to 60 percent). There is work to do on other indicators – such as a downtick the percentage of mothers of children 0 to 23 months who talked to their partner about family planning (51 percent to 31 percent) – giving MIHV-Tanzania the onus to use the small program’s flexibility to meet the program’s targets.

MIHV-Tanzania is somewhat unique from the other projects I have viewed so far in that it focused entirely on one district. The clear advantage is that staff and volunteers for the program know the community extremely well. Mullins said this knowledge leads to a deep knowledge of “all of their challenges,” and the realization that “some are way out or your rhelm.” She said the program helps addresses some those needs where it can be sustainable – such as a recently launching income generation portion of the “Survive and Thrive” groups, or working in concert with the Canadian Physicians for Aid and Relief’s efforts on food security, HIV/AIDS and reproductive health in Karatu.

Overall, Mullins is happy she to be in a smaller and more focused program – allowing her and her all Tanzanian staff to be flexible. Programs such as this definitely have their benefits beyond health to the districts they serve, but programs addressing major priorities of health ministries also have their place. I am currently visiting one such program – the Elizabeth Glaser Pediatric AIDS Foundation – in the Arusha region, and I welcome your thoughts and questions on larger, wider-reaching projects and small. targeted projects.

CHAPEL HILL, NC – Community leaders, educators, global health experts and researchers descended upon the Fed Ex Global Education Center at the University of North Carolina – Chapel Hill for a conversation about family planning and the Millennium Development Goals. The panel discussion, moderated by Maurice Middleberg, Vice President for Public Policy at the Global Health Council, highlighted a number of key issues related to family planning and more broadly global health.

Martha Carlough, MD, MPH, Director of the Maternal and Child Health Program and Assistant Professor of Family Medicine at UNC – Chapel Hill, shared data indicating that family planning interventions reduce maternal mortality around the world. Furthermore, the unmet need for family planning in the developing world is high; one in four married women want to avoid pregnancy, but do not have the means to do so. Unmet need continued to be hot topic as Ward Cates, M.D., M.P.H., President of Research at Family Health International (FHI), discussed the unmet need (68 – 90%) in low resource countries for HIV prevention tools (HIV testing, condom use, male circumcision, ARVs for PMTCT and contraception for PMTCT).

Pape Gaye, MBA, President and CEO of IntraHealth International, brought family planning into a broadened discussion about health systems strengthening and the unmet need for trained birth attendees. Redistributing health care workers based upon their skills rather than their roles was mentioned as one solution to the growing problem. During the dialogue portion of the event one audience member asked, “How do we establish in country investments in training a health workforce, and furthermore, how do we keep a health worker in their native country?” Mr. Gaye emphasized the importance of U.S. intervention to support the global demand for nurses and increased incentives on the part of the country to keep health workers.

In concluding the morning event, Maurice Middleberg emphasized the wealth of knowledge that had been shared over the course of the two-hour discussion, but he pointed out that simply having the knowledge is not enough. He pointed out that action, backed by knowledge is necessary if we expect change to occur. Mr. Middleberg urged the audience to take action, schedule district meetings with their representatives during the upcoming recess, write to them, make phone calls and invite them to future educational forums.

A video of the full event will be available shortly, please check back soon!